The bill’s most contentious provision was tucked into the 76-page draft that would prohibit assisted living residences from admitting anyone who “is or has ever been diagnosed with moderate to severe dementia, or requires hospice care.”
It would affect hundreds of residents struggling with dementia, and was the chief concern of those who spoke against the bill.
“The bill discriminates against people with Alzheimer’s,” testified Nancy Caiola, an advocate with the Alzheimer’s Association. “We must be in the business of increasing access to care, not denying it at every turn.”
The Alzheimer’s Association and AARP want to remove another provision that would require residents who may be at risk of wandering to carry identification that includes their name and the name, address and phone number of their facility.
“If you force them to wear a special sticker or name badge that says they have dementia, I think you’re violating their privacy,” said Carter Harrison, the Alzheimer’s Association’s head of state and local policy in the Washington metro area.
Commenters said this and other provisions further stigmatize dementia.
Others — including those who develop and run assisted living residences — were concerned that new staffing requirements in the bill would increase costs for operators and residents.
Supporters said the legislation would protect the rights of assisted living residents and would shield them from retaliation if they complain about their facility. It would also establish higher standards of staff training and require inspection records and violations be posted online.
Council member Vincent C. Gray (D-Ward 7), the chair of the health committee, said that he does not want to pass a bill that would be “overly burdensome,” nor does he want to stigmatize those living with dementia.
Council member Brandon T. Todd (D-Ward 4) said the bill needed to be amended to address the “severe consequences” to patients’ care, and said that he would like to find a middle ground between supporters and critics of the legislation.
There are aspects of the legislation on which both sides agree, including the need to update the current laws, which were passed nearly two decades ago.
Some say it would be better for the District Department of Health to craft new regulations, than for the council to amend current law.
“Today’s testimony made clear the failures of the proposed legislation, and very importantly allowed our council members to hear from many stakeholders whose needs and concerns were not considered,” said Christy Kramer, director of LeadingAge DC, an association of nonprofit organizations that provide services to seniors. It opposes the bill.
As the council has been crafting legislation to update the regulations regarding assisted living facilities, the city’s health department has been on a parallel track, working for the past year on new regulations.
The health department has recently circulated a draft of proposed changes, but has not yet made them public.
Gray, the bill’s lead sponsor, said at Friday’s hearing that the health department had dragged its feet until the council introduced the legislation.
“[The legislation] triggered a regulatory process that seemed to have faded into the ether,” he said.
If the council did not “keep the pressure on” the health department, drafting those regulations could take several more years, he said. But after four hours of public comment, Gray said he supports finding “balance between the regulatory and legislative process.”
Kate Sullivan Hare, executive director of the Long Term Care Quality Alliance, which crafted and advocated for the bill, said in an interview that the regulatory process would take too long.
“Any effort to do regulations at this point is too little, too late and it’s going to be too slow,” she said.
But Cheh said that the council and all involved have much more work to do.
“We really have to go back to the drawing board on this,” she said.